Re: Another happy re-birthday

[Guest guest]

Dear and Ricky,

Thank you so much for the good wishes. I just got back from the beach and just started reading my email. We celebrated our joint birthdays there and had a great time. It was wonderful to finally go somewhere besides Pitt. Not that I don't LOVE PITT.

Life is certainly good!

Ali

Save Life - Be A Live Donor and An Organ and Tissue DonorAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.caringbridge.compassword - alilingerfelttaitalso check out :www.//health.groups.yahoo.com/group/Livertx-PSC/It's a new sister site from the PSC Support Group that is for transplant issues.www.pscpartners.orgPSC Partners Support GroupBuy Notecards and Support Research for PSCSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

, you are so sweet to remember us. Thanks for remembering Simon too. What a guy! He told me the other day if I thanked him one more time he would take his liver back!!!!!!

Ali

Save Life - Be A Live Donor and An Organ and Tissue DonorAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.caringbridge.compassword - alilingerfelttaitalso check out :www.//health.groups.yahoo.com/group/Livertx-PSC/It's a new sister site from the PSC Support Group that is for transplant issues.www.pscpartners.orgPSC Partners Support GroupBuy Notecards and Support Research for PSCSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

if I thanked him one more time he would take his liver back!!!!!!

Don't worry, he doesn't want it back and he certainly doesn't want to go through what it'd take to reattach it!!! :0) He loves his momma! As does anyone who knows her!

Love, (see!)

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[Guest guest]

Ali,It is so great to see you post ! I'm glad you got some R & R at the beach. This fall has been so warm.Take care,LeeDear and Ricky,Thank you so much for the good wishes. I just got back from the beach and just started reading my email. . 

[Guest guest]

Happy re-birthday Ali! It's great to hear how well you are doing.

wife of

PSC & UC 2000 J pouch 2004 Tx 11-18-06

[Guest guest]

Dear , Thanks so much for the well wishes. How is doing? And yourself?

Ali

Save Life - Be A Live Donor and An Organ and Tissue DonorAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.caringbridge.compassword - alilingerfelttaitalso check out :www.//health.groups.yahoo.com/group/Livertx-PSC/It's a new sister site from the PSC Support Group that is for transplant issues.www.pscpartners.orgPSC Partners Support GroupBuy Notecards and Support Research for PSCSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Hi Lee, How are you? It was great to get away.

Ali

Save Life - Be A Live Donor and An Organ and Tissue DonorAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.caringbridge.compassword - alilingerfelttaitalso check out :www.//health.groups.yahoo.com/group/Livertx-PSC/It's a new sister site from the PSC Support Group that is for transplant issues.www.pscpartners.orgPSC Partners Support GroupBuy Notecards and Support Research for PSCSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Yo soooo sweet.

Ali

Save Life - Be A Live Donor and An Organ and Tissue DonorAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.caringbridge.compassword - alilingerfelttaitalso check out :www.//health.groups.yahoo.com/group/Livertx-PSC/It's a new sister site from the PSC Support Group that is for transplant issues.www.pscpartners.orgPSC Partners Support GroupBuy Notecards and Support Research for PSCSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

, that taper is hell for sure. I was only on it for the small rejection period at Christmas and tapered in Jan. It was great while I was on it in some ways. My energy level was definitely better. The down side was no sleep. Still I feel blessed to be off it. My only problem is this arthritis that I have now. I did have it before tx but it has gone to a whole new level now. They are messing around with med changes again so we will see what happens. Anyhow, every day is a good day and it sounds the same for . Congratulations.

Ali

Save Life - Be A Live Donor and An Organ and Tissue DonorAli Lingerfelt-Tait180 Blackberry Inn Rd.Weaverville, N.C. 28787www.caringbridge.compassword - alilingerfelttaitalso check out :www.//health.groups.yahoo.com/group/Livertx-PSC/It's a new sister site from the PSC Support Group that is for transplant issues.www.pscpartners.orgPSC Partners Support GroupBuy Notecards and Support Research for PSCSee what's new at AOL.com and Make AOL Your Homepage.

[Guest guest]

Ali, thank you for asking. is doing really well. He is

tappering down from 20 mg to 7.5 of Prednisone which has caused some

aching in his joints and he is getting over a cold which has made him

tired, but other than those two things, he is doing great. His labs

keep getting better and better which is why the tapper is going on and

we are waiting for his results from this week. He is now watching our

three year old daughter every day instead of sending her to the baby

sitter. It is giving the two of them some daddy/daughter time, plus it

saves us some money. It's just great that he feels up to it. It

amazes me how much better is quality of life is this year as opposed to

last year at this time. We were waiting for the call and in and out of

the hospital constantly a year ago. I haven't missed a day of school

this year, which has helped my second graders. Last year, and the year

before, I missed way too many days. I was out for an entire six weeks

straight during his transplant, and lots of days here and there before

and after the transplant. I'm so thankful for the change.

wife of

PSC & UC 2000 J pouch 2004 Tx 11-18-06

[Guest guest]

-----Original

Message-----

is doing really well. He is tappering

down from 20 mg to 7.5 of Prednisone

Isn’t it strange

how centers do things so differently. They started lowering Ken’s Prednisone

a week after transplant. He was

down to 2.5mg in about 1½ weeks (where he remains). Do you think the living donor route made

the difference or is it just centers?

Barb in Texas __

[Guest guest]

It is strange how

different it all is.  Todd was never even put on Prednisone…Prograf was

it!

Joanne (mom of Todd)

 

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[Guest guest]

Barb, had been down to 2.5 pretty quickly before a couple bouts

of rejection. It took a while to get the numbers back where they

wanted them in order to start tappering again. He is now on 2 mg

Prograf twice a day and 1500 Cellcept twice a day. They are still

careful about the level of Prograf due to his wacky reaction in the

hospital.

wife of

PSC & UC 2000 J pouch 2004 Tx 11-18-06

[Guest guest]

>

> It is strange how different it all is. Todd was never even put on

> Prednisone Prograf was it!

Yes it is odd, here at U of Mich I have been tapered down to 10mg

prednisone by the surgical team (who follow tx patients for the first

3 months after discharge or until stable). The final taper will be

left up to the hepatologists that take over follow up care after that.

Tim R, tx #3 7/7/07

[Guest guest]

Tim,

What I find really strange is that Todd

was never on Prednisone after transplant and others from the same transplant center

were.  I wonder why they put some on and not others.

Joanne (Mom of Todd, 21, PSC 01, Crohns 02,

TX Twice 03, rPSC 05, Diabetes 06, Living life to the fullest 07)

 

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